Epilepsy in the World Today: The Social Point of View

Philip Lee

International Bureau for Epilepsy, Leeds, U.K.

For 4,000 years and more, people with epilepsy havelived their lives in a world dominated by fear and igno-rance about their condition. Today is little different.Wherever you go, whichever country you might visit,you will find the same thing. It might vary by degree, andit might manifest itself in different ways, but it is alwaysthere. Sometimes it is blatant and open. More often it ishidden and disguised. Always it is there.

Talk to any persons with epilepsy, and I am sure theywill tell you the same thing. Whether it be in New Yorkor Nairobi, Bogota or Brussels, Canberra or Calcutta, thefact is that people with epilepsy and their families allover the world experience prejudice and discrimination,isolation and exclusion. They, and the whole condition ofepilepsy, are in short, stigmatised.

What does this mean in real and practical terms? Itmeans that every aspect of the life of a person withepilepsy can be affected. Imagine having to cope with themedical consequences of a long-term condition such asepilepsy and then, on top of everything else, having toface the cold shoulder of a society that seems to want topush you away at every turn. How cruel it is to be deniedthe support and comfort and the care of others just whenyou most need them.

Having epilepsy and being the victim of society’sstigma is to live your life on the margins. Out there it iscold and often friendless. Epilepsy and people with epi-lepsy are something to be avoided. Suspicions becomearoused. Old superstitions emerge, often from deepwithin or passed down from previous generations. Putsimply, the vast majority of people know little or nothingabout epilepsy. What they think they “know” is oftenwrong, which is even worse. People are usually scared ofepilepsy. They fear it because, like most things we fear,they do not understand it, and things we fear and do notunderstand, we do not want to get close to.

Let me give you just some limited examples of thesocial prejudice and discrimination of stigma in action:Parents prevent their children from playing with childrenwith epilepsy from fear they will pass on their condition.Schools deny children with epilepsy the opportunity to

participate in perfectly safe and ordinary curriculum ac-tivities. Practical things like finding a home, obtaininginsurance, making friends, and having a family—thesecan be traumatic and desperate experiences for the per-son with epilepsy.

In the critical area of employment, the word “epi-lepsy” on a job-application form is all too often the endof anyone’s hopes and dreams of working. This well-researched area consistently reports, in countries aroundthe world, higher rates of unemployment in people withepilepsy compared with those of the general populations.Talented and skillful people are being denied the oppor-tunity to prove their potential and to add value andwealth to their country’s economy and to their own lives.Society as a whole loses out, not just the individual.

Is it surprising therefore that faced with this scenario,so many people with epilepsy lack confidence in them-selves, have low self-esteem, and even come to stigma-tise themselves? It is clear that society’s stigma seriouslyaffects the quality of life of a large number of peoplewith epilepsy.

Human beings have that in-built inherited fear of thedark and all those strange and mysterious things they donot understand that lurk there. In social terms, this iswhere you will find epilepsy, still hiding away in thedarkness.

It does not have to be like this. It should not be likethis. We can change it. We can bring epilepsy out of theshadows. That is one of the major goals of the GlobalCampaign Against Epilepsy.

Many countries have turned to, or are turning to, leg-islation to combat discrimination and prejudice in all itsforms. The recent revision of Indian law that removedepilepsy as a barrier to marriage is just one exampleof this. Legislation can help, but there is also ampleand growing evidence to show that this alone is notenough. People with epilepsy in the United States ofAmerica, the United Kingdom, and Australia, for ex-ample, still experience bias in their lives because of theirepilepsy despite the law’s protection. There is a need forsomething else more fundamental than laws on a statutebook.

If we are really going to change things, if we are reallygoing to remove the stigma that attaches itself to epi-lepsy, we have to change persons’ attitudes. We have to

Address correspondence and reprint requests to Mr. P. Lee at BritishEpilepsy Association, New Anstey House, Gate Way Drive, Yeadon,Leeds LS19 7XY, U.K. E-mail: epilepsy@bea.org.uk

Epilepsia, 43(Suppl. 6):14–15, 2002Blackwell Publishing, Inc.© International League Against Epilepsy

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replace their fears with understanding. We have to ex-tinguish the myths and misconceptions and establish thefacts and the truth.

This is an enormous challenge, but we can succeed.The task is already under way.

Who are our targets? That is easy: quite simply ev-eryone in the world who does not yet understand thefacts about epilepsy.

What are our weapons? Information and education,and spreading the facts and knowledge. In a world inwhich information of all types is becoming increasinglyaccessible through the use of technology, we have won-derful opportunities to get our message across.

What is our message? Just that people with epilepsyare no different from anyone else—they just have epi-lepsy. That epilepsy itself is a medical condition, a dis-order of the brain—not madness, not possession bydemons or devils. That people with epilepsy should havethe same opportunities as everyone else in society, tolead full and complete lives, free of prejudice, discrimi-nation, and stigma.

The unique collaboration of the International Bureaufor Epilepsy, the International League Against Epilepsy,and the World Health Organisation has already achievedsuccess. Already the Global Campaign has heightened

public awareness and raised the political profile of epi-lepsy through regional conferences, media campaigns,and Declarations, but there is still so much more to bedone, so much more we can all achieve.

Medical advances in diagnosis and treatment havechanged the lives of countless people with epilepsy, andas medical knowledge progresses, and the benefits of thatknowledge spread equally to all people in the world,more and more will benefit. But however effective thepill and however skilled the surgeon, if the diagnosis ofepilepsy remains, so does the stigma—until we changepersons’ attitudes.

The Global Campaign has identified what the prob-lems are. We are finding the solutions. We need theresources and the political and personal will and com-mitment to mobilise them. We need to establish epilepsyas an important public, political, health, and social carepriority in every country.

Epilepsy is coming out of the shadows. After all thistime, 4,000 years and more, there is progress. The long-est journey may start with a single step, but our journeyhas begun. We have taken that first step. Attitudes arechanging. People are listening with their hearts andminds. We will get there, and the Global Campaign isleading the way.

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Epilepsia, Vol. 43, Suppl. 6, 2002